Monday, November 10, 2014

The 4th Secret Stocking Project -Orion Strong

The Butterfly Fund is a non-profit organization that was started because of the need for awareness and help of those children who suffer from the horrific disease Epidermolysis Bullosa-also known as EB.  EB children are known as Butterfly Children, due to the fact that their skin is as fragile as a butterflies wings. 

The Butterfly Fund has since expanded it's hope and is dedicated to helping families who have a child diagnosed with any serious life altering disease or event in their lives. Any child who is FRAGILE is one of their Butterflies.

They help families in many ways including, but not limited to, minimal financial aid, clothing, services and care. The Butterfly Fund does not discriminate any anyone and everyone who has a child within the US with a serious illness or event, may inquire with us. The Butterfly Fund is run solely by volunteers and no salaries are paid.

i was introduced to this organization through Orion Strong, the son of a friend.   On June 15th, 2013, 14 year old Orion Strong was diagnosed with AML , a rare type of leukemia, with long treatments and many expenses.  

After four successful rounds of chemo and complete remission for five months, Orion went to his six month check up to learn that his white blood cells are super low again or "neutropenic". His heart check also showed signs of weakness from the prior chemo. On May 19th he was readmitted into UCSF, where he was expected to remain inpatient for several months for chemotherapy and a bone marrow transplant. His first round of chemo after relapse was unsuccessful and he got a fungal infection in his lungs and colon. The doctors were very hesitant to go forward with transplant and after discussing the risks, Orion has made the very brave decision to spend his life out at home with his friends and family.

Orion is home on hospice care. He was given a few weeks to live. The family is trying to savor the moments and make his last wishes come true. They have a Youcaring  fundraiser link set up to help with the expenses and allow the family to stay together through this time without stressing about bills as well.  If you are able, please consider donating. 

Orion told his mother he wanted to be a hero in his life and that he feels like he's gotten that chance... He said that if there was one thing people could do to remember him, it would be that... When you walk into a room and you see groups of people hanging out, take a moment to look around and notice the one or two people not hanging out with anyone and take a minute, to go say hi. To make EVERYONE feel like they count. To let them know they're not alone. :)

Another simple act that you can do to honor  Orion's kind spirit and make a difference in the life of a child is to help bring a smile to other children who are medically fragile, by purchasing a gift for the Secret Stocking project. 

* At 1:35pm, Nov 10th Orion Elijah Strong passed on. He was surrounded by family and his transition was very peaceful. He was blessed to know that his dream of becoming a HERO had been realized and continued to want to serve even after his passing

The Butterfly Fund organization has been helping Orion and his family. This is how i came to learn about the organization.  They are currently collecting gifts for children who are medically fragile and their siblings. 

There are HUNDREDS  to choose from - each one guaranteeing our Butterfly Children a wonderful Holiday! We thank you for your beautiful support!!!

Christie’s list:
Dana’s List:
Elizabeth’s List:
Kim’s List:

Purchasing a gift is easy,and there are all different prices ranges. On each wish list you will see a child's name, age and gift they wish! Simply add the gift to your cart and checkout. A shipping address will show for this volunteers location. You ship directly to the Volunteer. On the gift tag you can write 'In Honor of Orion Strong', if you'd like.

Please do not choose gift wrapping, the volunteers will wrap the gifts when they receive them. Also please do not purchase multiple gifts from different wish lists and have them shipped to the same address. Each wish list has it's own shipping address.

The deadline to purchase gifts from this list is Nov. 24th.

Thank you so much for helping to honor this amazing young man and help to spread smiles and love to those that need it.  Thank you!

Formore information on The Butterfly fund, Secret Santa Stocking Project and Hope For Orion click on the links.


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